Bone scan, CT, and PET?????

[DonnaD]

Hoping I can get a little info from my sisters here. Must admit I have not done any research yet but I will.

As some of you know I have been having issues with a rib fracture discovered right after treatment. Recent pain required yet another bone scan and CT. The CT came back showing healing and no new fractures. The bone scan had two areas light up in the original area. After seeing a Thoracic surgeon on Mon. he suggested a PET scan in Sept if there is no improvement or the pain gets worse.

I am really confused about what these tests show. Can anyone help me understand the difference between a bone scan, CT and PET/scan. Is there a concern about the amount of radiation in a 3 month time frame?

Also my tumor markers are in the normal range, but slowly inching up. They all have been done with the Abbott Architect automated analyzer :). The report states using this method numbers are 12% higher than other methods of testing.
CA 15-3
12/07 15.9
6/08 15.7
12/08 17.1
6/09 17.7

I would appreciate your insight. I don't like being in this seond guessing world we all live in now.

Thanks,
Donna

[Lori R]

Donna,
Thank you for asking this question. I've received regular PET/CTs (found liver spot) and an annual MRI for the brain (all clear) and a DEXA (ostepenic)

I've been concerned about not having a bone scan. Would a bone scan show something that all of these other tests would have missed?

Anxiously awaiting responses from all of the brainiacs on this site.

Lori

[Ruth]

From what I understand PET can pick up bones spots so I think it can take a look at everything however, it does have false positives or spots light up that may not be something to worry about.
Hopefully Becky will log in soon ~ our smart RN lady knows!

[Henny]

Well Donna-here goes

A bone scan is a metabolic scan where you get injected with a labeled mineral. It goes to all the bones but wherever the bone is healing (fracture, mets, other bone diseases etc) more of the labeled mineral is taken up. It's specific for where but not what is causing the bone to remodel itself.

A PET scan is also a metabolic scan but you get injected with a labeled sugar. The sugar is taken up by cells that metabolize lots of glucose. They look for the sugar to be taken up in areas where you wouldn't expect lots of sugar to be used. It's normal to see uptake in the heart but not in the liver or lungs.

A CT scan is an xray done in 360 degrees. It doesn't have anything to do with cell metabolism. It shows the anatomy really well.

The PET/CT combines both so you get the metabolism from the PET which is fairly fuzzy with the really clear CT so when they're fused you see exactly where the cells that are growing faster are.

Right now there is a lot of discussion in radiology about bone scans vs PET scans for bone mets. Some say bone scans are better and others say PET. There is a new kind of bone scan coming out in a few places that is a specific PET bone scan (with sodium-fluoride instead of glucose) that looks like it will be a great imaging agent.

I know this doesn't help make the choices but I hope it isn't too rambling of an explanation

[DonnaD]

Henny,
God bless you! I really appreciate your input about the difference between all the tests.

I am trying to go over all tests results again and see what they really say. I only wish the same person reviewed all bone scans. Not so.

My onc is going on a maternity leave soon. She suggested a PET/CT in Sept. I am tired of second guessing everything. That is the route I will probably go with. But I am very interested in the new type of bone scan you mentioned. I will persue this more. Being at a large teaching hospital they should have some insight in this.

Your signature is very similar to mine. I am curious about you taking Zometa for 3 years. That was never even discussed with me. Do you know your tumor markers?

Thanks sis, your a doll.
Donna

[Henny]

Donna,
I'll look for the sodium fluoride PET bone scan articles on Monday when I get to work-I know they're in a folder somewhere. I do know the scans are being done in Seattle and I think maybe Stanford is doing a study looking at combining the sugar and sodium PET agents but don't know the preliminary results.

I asked my onc for zometa when I read about it last year. He agreed that it was a good thing to try as a prevention but would be off label so I may have to pay for it. Fortunately my insurance covered it.

I also asked him about serum tumor levels when I was first diagnosed and he thought they were too unreliable so I didn't push it. Maybe it's time to ask about it again.

In the meantime I noticed a couple new lumps near my scar and had an ultrasound today which showed 2 spots but wasn't specific. Could be scar or a nasty thing. Seems like a biopsy is in my near future. I'm going to put this in a box and try not to think of it this weekend when I can't do anything about it. Ah for the good old days when life was a little easier and I was a little naiver

[Mary Anne in TX]

Donna and Henny, very best wishes to you both! ma

[Becky]

Dear Donna

Of course you are scared and confused but I really think everything your body has gone through is causing you difficulties now. You got nabbed with the side effects of radiation on the ribs. You got a broken one and between age and the weakness in that bone due to rads, it is not (and may probably not) heal 100% properly. That is what the CT is showing. If you get a PET/CT, it might even freak you out more. Why? Because healing or injured bones will light up too (not just a cancer spot). Why? Because healing and injury are also more metabolic too.

As far as the markers are concerned, don't be concerned. I am almost 5 yrs out and my first marker was 11 and it has inched up over the years to 26 (and it is pretty stable there now - sometimes 21 or 23 etc). I think this is normal and I wouldn't be concerned with it. Movement from 17 to 37 (which 37 is still in the normal range) would pique my interest and I would ask for the markers to be re-run in a month to see if they continue with larger leaps but there is no difference in your numbers. Test wise, 15 is the same as 17.

Also, although we've posted many articles on small studies of women (12) where the cancer changes from hormone positive to negative or Her2+ to Her2- (or vice versa), it only happened in that small study 30% of the time. What I am getting at here is it is rare for Her2+, hormone negative cancer to go to the bones (and only to your injured rib as the bone scan didn't have any other spots!) Hormone positive cancer loves bone. No way. It's your gosh darn broken rib and rads caused it to weaken, break and not heal properly. I am sure if you still have pain, you will want to get the PET but discuss with the doctors before hand what you think will happen (healing bone lights up) and are there any assurances that that won't happen and if it does, then what? How will they determine what your problem really is (cuz I don't think its cancer but of course you have to have professionals determine this and you need to ask them how they are going to determine this).

Rest, rest,rest and baby, baby, baby that side to ensure and encourage as much healing as you can between then and now. Even if you half the pain, you are going in the right direction as cancer pain does not improve and yours will because you don't have cancer. I really believe this with my whole heart (but no way will I discourage you from insuring this). Take your calcium and take at least 2000iu or more of Vitamin D3 too. Look up the rads side effect issue and see if there are any healing tips. Even call your rad onc or rad nurse for tips too. They may have some.

I am giving you a huge cyber hug since only a pat would do if we were together so you can baby your ribs.

[AlaskaAngel]

Donna, your question brought out exceptionally good info and I hope this thread gets lots of reading over time.

I just want to add a comment about one question you had -- your concern about the amount of radiation you are getting through imaging. The concern is real and I'm glad you recognized that.

Because cancer patients often see a variety of doctors over time, and because no organized effort is consistently made by medical providers to track the cumulative amount of radiation we receive, the risk involved goes unmentioned.

At 5 years out as a NED stage I, I made a list of every bit of radiation I have ever received and took it to my annual physical exam to discuss it with my PCP. (His daughter is a radiologist.) The reason I did this at the time was because I was being considered as a participant in the TEACH trial for lapatinib for the HER2's who missed out on trastuzumab, and in order to qualify for that, I had to have a CT to demonstrate that I really was actually NED to begin with. I had the CT, and the tech walked back in and said she was going to have to do it over for some reason. I was very reluctant, but because of the trial I went ahead and let her. For almost a week afterward, I had radiation sickness. That term is not what medical providers euphemistically call what I had, but that is what it was. I could get up okay in the morning but by noon I could barely stand up, and by night I was flat in bed, ALL week. That told me a lot about radiation exposure. And the trial required having CT scans every 3 months, for a year. In addition, over the years I likely might need other scans from time to time.

Think about it. The medical providers certainly don't.

I withdrew from the trial.

Sad to say, the amount of rads I have received over time is very questionable medically. And remember also that it was recommended for someone who was only a Stage I, with no evidence of disease.

You are the only person involved with your medical care who is likely to keep a tally on the amount of radiation you receive over time.

This is very poor practice on the part of medical providers and continues to go unnoticed. As patients, especially in the age of computerization, the amount of rads we receive should be tracked on every medical record we have from the very first dose we get.

AlaskaAngel

[DonnaD]

I have found great comfort in all your post, especailly Becky's and her Cyber hug :). I will call the rad. onc tomorrow and see what she thinks or if she wants to go over everything with me in her office. Thank you one and all.

Henny, I am praying hard for scar tissue. Someone on the board had a similar situation, all was okay.

AngelAlaska, I wish we would have had more chatter about the radiation issues we all race. I appreciate your sharing your thoughts on the subject.

Donna

[Mary Anne in TX]

Great information! Thanks so much everyone! ma

[Joan M]

Donna,

Regarding a PET/CT scan, anything cancerous but smaller than 1 cm has a high probability of not lighting up. And I'm not sure whether the size of spots on the bone scan are equivalent to the size of spots on a CT scan, meaning that if something shows up as a nodule on CT scan and it's larger than 1 cm, it should light up if it's cancerous. However, keep in mind that inflammation can also light up, as well as bacterial and fungal infections, tuberculosis, etc.

Joan

[chicagoetc]

Donna,

Did you see/talk with the rad onc? And, if so, with what result?

Melanie

[DonnaD]

I have been in communication with my rad onc by e-mail. She is happy to see me. Follow up visits are done on Tuesdays and I can't go July 28 because my PA family is coming in as well as the SD kids. Soo...I am trying for an appointment Aug.4. Called today and did not get a return call with a date. I WILL call back tomorrow.

Donna

[Sheila]

Hey Donna
I will be there August 4th...Dr. and chemo....maybe we can do coffee or lunch....nothing better than that hospital atmosphere

[Mary Jo]

Hi Donna.....There is nothing I can add to what your other "sisters" said, but can I give you a gentle hug and reassurances that I'm sure all is well????? Ok, here goes........GENTLE HUG and CALMING REASSURANCES.

Love,

Mary Jo

[mmoons]

Thank you for asking this, Donna. I learned so much for reading this thread...as I always do from all of you!

Love,
Maureen